Understanding a Clinical Ethics Consult: Survey of Parents.

UNLABELLED: AbstractObjective: To explore parents' understanding of clinical ethics consults, what might influence their openness to an ethics consult in the future, and what they define as medical ethics. STUDY DESIGN: Electronic survey of parents of children with complex medical conditions. Questions were adapted from a study of adult patients' and family members' experiences of ethical concerns in the healthcare setting. Respondents were also invited to participate in subsequent interviews. RESULTS: We surveyed 218 parents and interviewed 28. Most respondents (63%) were not familiar with ethics consults and did not know how to request one (88%). For those reporting interest in a future ethics consult, knowing more about how ethics consults could help (71%) and a doctor's recommendation (58%) would most influence their interest. Hesitancy in speaking with an ethics consultant most often stemmed from worry that their child/family would not be understood (77%). Parents defined "medical ethics" as relating to serious medical conditions (67%), communication with the medical team (61%), and goals of care (57%). Interviews demonstrated generally consistent themes with the survey. CONCLUSIONS: Pediatric ethics consultation is not a commonly recognized or utilized resource for families facing medical complexity and ethical challenges. More needs to be understood about how best to meet patient and family needs via ethics consults.